Abby · Down syndrome · Uncategorized

Abby’s surgery story and results.

Early. Too early, I wasn’t ready. I scooped Abby out of bed and put her right into her carseat in the car that I had already warmed up. She fell right back asleep as we made our trek to the hospital. I was alone. I wasn’t planning on being alone, but because of a scheduling error, her surgery was one day sooner than we had expected, and my sister would not be here until after it was over. As an added bonus, my brother decided to come in to help as well. But both would not be there until later, and because mornings with Casey are unpredictable, Lance had to stay back to get the boys off to school.waiting for surgery

At the hospital, I changed Abby into some adorable scrubs we were ushered into the waiting area where a wall of toys awaited my smiling toddler.  We crashed cars and sang songs as the different doctors from the different specialties came in and out, asked all of the same questions, got all of the same answers.  Her ENT came in and crawled right down on the floor with Abby in his continued effort to win her over. I call him “Dr. Doogie” because he looks super young.  But what he may lack in years, he makes up with in knowledge and personality.  He played with Abby for a minute as he explained all of the procedures again.  As he spoke, the nurse fitted me in all of the hospital garb so I could take her back to the operating room and stay with her until she was asleep.

We walked down together, Abby in my arms. I sat with her in the warm operating room while several nurses, the anesthesiologist, the audiologist and the ENT danced about getting things ready. Before I was ready, a nurse came back from behind me and gently placed the mask on Abby. Her tiny body clenched up a bit for a second, and then she nuzzled down into me. I sang her favorite song, “Twinkle Twinkle Little Star” as she drifted off to sleep.  Before I was ready, they scooped her from my arms and laid her out on the table.  They allowed me one last kiss and then, before I was ready, the nurse, holding her arm around me, ushered me out of the room.

No one is ever ready to leave their child to a team of doctors for any procedure, I don’t think.

Gone are the days of holding back the emotion when it comes to my little girl. Gone are the days that I would worry what people think if I lost it in front of them. My baby. My tiny, still baby. The tears fell openly and the nurse squeezed me tighter as she led me to the waiting room.

Lance arrived about an hour later with some breakfast I could not swallow because the anxiety had produced a large lump in my throat. Shortly after, the audiologist came and got us. The tubes were in, the fluid was drained, the sedated ABR was preformed. I knew the news before she told us from the look on her face: her hearing loss had not improved. It’s permanent.  We discussed hearing aids and she gave us her personal phone number if we had any questions.

Another hour later and Dr. Doogie came and got us. Abby had done well in her surgery, but things weren’t as he had hoped. She has tracheomalacia and bronchiomalacia. Basically, her airways are floppy and malformed. Those aren’t severe and should improve with time, but also explain why when she gets a respiratory infection it is much worse for her than other kids.  She also has some issue with the area (carina)  that separates the two main pipes into her lungs (bronchi). It’s flat and underdeveloped. Not sure what that means, but like the other dinosaur-termed issues she has, he said it should get better with time. Lastly, she has a laryngeal cleft. This will need to be operated on in the near future (no idea when) and should help her to not aspirate fluids anymore.

Shortly after we spoke to the young doctor, we were taken back to see Abby. The nurse let me pick her up as soon as I had scrubbed my hands, and there she stayed for the next several hours.

After surgery snuggle

Tomorrow, her recovery story.

20 thoughts on “Abby’s surgery story and results.

  1. Too harsh for any parent and child. I can’t see squat through the tears. Cyber hugs aren’t much but all I can pass on right now xxx

  2. I wish I could tell you it gets easier, but I’d be lying. Big hus to you and sweet Abby. Everyone needs a Dr. Doogie and an understanding nurse; I’m glad you have both. xo

  3. My tears are flowing. I really feel your pain about leaving her in that room. Thank you for sharing this as it has eased some guilt I have about an airway issue we had. Wish there were more Dr. Doogie’s in the world. They are the best. I hope having some answers brings some comfort. Prayers for continued healing.

    1. It does bring a little comfort. But it still means that we have to be super careful with her. And keeping her inside is making us all crazy. We see an immunologist soon, so that should help. Love you, lady.

  4. I got tears here too. There isn’t any way to prepare for that sense of helplessness when you leave your child for something like this. But I love that nurse, and I love Dr. Doogie. And I love that little girl of yours.
    Making me smile through my tears this morning is the steady stream of Instagram photos on the side of your page of your brother and sister’s visit with your kids. It’s like our sneak peek at tomorrow’s post.

  5. Poor baby girl (and poor mama!) One of the worst feelings ever is leaving your baby in the care of some doctor under anesthesia. I’m so glad you had such a good team to rely on!

  6. poor kiddo. I hope she’s feeling better today. I saw your Facebook status. Hopefully she gets less gunky today while she’s getting better.

  7. Reading this with tears in my eyes and sending you big virtual hugs, mama. We have been through sedations for ABR and adenoidectomy and numerous other things and it never gets easier to turn your baby over to someone else. When Matthew got his hearing aids we got to see his world come alive for him, and it has been amazing. Thankful you have Dr. Doogie and a great team behind you as you go forward. Lots of love and cuddles to Miss Abby ❤

  8. Reading your story brought back so many memories of Lily’s eye surgery. I remember as I cried leaving her, the nurse saying to me…”Its okay…the good mom’s always cry”. Not sure if that was to make me feel less helpless or not. I am praying for you beautiful baby. I am anxious to hear the recovery story. I can imagine that with your answers brings on more to your journey. Stay strong…we are all praying and sending hugs!

  9. Oh, Lex, I’m sitting here crying. When Danny had surgery this summer it almost killed me when they wheeled him away from me. It was horrible. And his procedure was minor compared to what Abby’s been going through, so I can only imagine how hard that was. I so hope she feels better soon.

  10. No it’s never easy. Glad this one is behind you now and only wish good thoughts could keep the rest of the bad things away. Hope her recovery is going smoothly. T&As are never fun to recover from.

  11. I know exactly how you were feeling. My son has been through the same Procedures. He was diagnosed as bilateral neurosensory hearing loss. (completely deaf, on abr could not hear over 120 MHz ). Contact me if you would like to. My son has autism and is implanted with one cochlear implant. We are in the process of looking into having him implanted on the other side.

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